A Dream of a Brighter Future

Monday is Martin Luther King, Jr. Day. It seems fitting to observe on this holiday honoring the great civil rights leader what many have called the next civil rights movement.

The new wave of prenatal testing advances has brought into focus what we mean by America’s creed that all are created equal. With the latest in micro-array testing, thousands of genetic conditions can be diagnosed. And, with the advances of non-invasive prenatal testing (NIPT) from just a blood sample, it can be expected that those conditions already with a high detection rate, like Down syndrome, soon will be able to be diagnosed without the risk of miscarriage of current diagnostic tests. Therefore, more pregnancies will be able to be diagnosed with more conditions earlier and safer than ever before. How will this impact how we view those born with these diagnosable conditions?

The manufacturers of new prenatal tests and medical organizations embrace the advances for providing more reliable information with less risk. Indeed, they do, but, laboratories and health care providers also have a financial incentive to offer these new products, which are expected to have at least a $600 million market. If the testing were offered in an ideal way, perhaps prenatal testing would be a non-judgmental delivery of information. But, that is not the society we live in.

Parallel to the advances in prenatal testing have been the advances made by civil societies in respecting and including individuals of all abilities. It was just 100 years ago that a child with Down syndrome had an average life expectancy of under 10 years of age. A child can now look forward to living close to 60 years and that number is rising. This improvement is in part due to medical advances in heart and other surgeries, but it is also due to children no longer being warehoused and forgotten. Instead of the medical standard of care being to recommend institutionalization, now children born with Down syndrome are expected to be taken home, just like any other child. And, just like any other child, they are entitled to a free and appropriate public education; there are job supports to provide for gainful employment; and, individuals with Down syndrome are living fuller lives than ever before.

But, for all of these advances, we still live in a world that is averse to those labeled as disabled, and no more so than in the medical profession. Studies throughout the years have found that, if given the option, physicians and genetic counselors would choose not to have a child with Down syndrome. The mere existence of the test is understood in today’s medical administration as being a test for something to avoid–even the commentary on the new tests and the marketing materials of the laboratories appeal to a mother’s desire to be reassured that their child does not have Down syndrome through a negative test result.

Fortunately, though, just as life has improved for individuals with Down syndrome, so, too, has society’s treatment of those with Down syndrome, especially with today’s current generation of young people. Rather than be raised (as I and many others were) where kids with learning disabilities were segregated, today’s children attend classes with fellow students who happen to have Down syndrome. And, more and more medical providers are delivering non-directive and compassionate care: providing balanced information about Down syndrome and delivering the diagnosis in a respectful way, while directing the parents to available resources for support.

This better way of caring for expectant parents is what we should expect–and it is what we need, now, more than ever.

The time is now for this better level of care because prenatal testing is about to become the norm. With laboratories seeking to demonstrate through clinical trials that their tests are reliable for all populations, not just those considered high-risk, NIPT laboratories will be pushing their tests out to every venue they can find. And, right now, there are not sufficient balancing resources or trained professionals to provide them.

We embrace prenatal testing as a culture because we live in the information age. If we really believe that, though, shouldn’t we also provide all of the information? Doctors often concede that they will not be able to overcome a patient’s lifetime of experience in order to balance the impact of a positive test result. Patients come to them having lived in a culture where individuals with Down syndrome are still shut out of the work place; patronized with over-sentimentality by folks who mean well, but do not want to actually spend the time to get to know them as individuals; and, are stigmatized for having cognitive challenges which is antithetical to the whole spirit of the information age.

There are those who are resigned to the current status: that prenatal testing will ever proceed, in a culture that still stigmatizes, and therefore all they can do is focus on the child they know. They excuse non-action and lack of commitment based on lack of funds or manpower. These non-actors–many of whom have appointed themselves leaders–by focusing on the children they know, will look around in 20 years and wonder why it’s only the children they knew 20 years ago who are still showing up at their events.

This is not to disrespect the effort the leaders of the disability rights movement have made. My daughter, and the thousands like her, get to enjoy a fuller life due to the battles they fought 40 years ago. And, we can all sympathize that a person can only fight for so long: to take their child home with them; to demand they be taught in school; to fight to get them a job and an apartment in the community. But, now is not the time to stop advocating.

Because we know that it is a brighter future if it includes those with Down syndrome. Parents know this from their own experience. For all the struggle and sacrifice, parents know it was worth it and they love their children. But not just them. Their children’s brothers and sisters love them and think of themselves as better people. The classmates, co-workers, and doctors who get to know their children with Down syndrome have a more positive view of living a life with Down syndrome. And, their children themselves tell us that they are happy with their lives.

Don’t we want more of that in the future: parents who love their children; brothers and sisters who are better people because of their sibling; and people who are happy with their lives? Think of what a better world it will be if we include these fellow members of the human experience into our lives?

We have done better with each successive generation of including those who used to be shunned, ostracized, discriminated against. Let us not forget these victories and lessons learned through the civil rights movement that we commemorate on Monday. Let us instead re-commit ourselves to Martin Luther King’s Dream, but let’s broaden that circle of children holding hands beyond just race, so that the circle also holds those hands with the single palmer crease and smaller pinky of children with Down syndrome.

[Hat tip to Michael Hyatt for providing the framework and inspiration for this post.]

Comments

We have a major challenge in that the Down syndrome community is so small, about 0.1% of the population. We don’t have the critical mass that MLK had behind him. The ones we should have been able to trust – the medical professionals, have been the first to turn against us with their new wave of medical eugenics. Equality for our children is still a dream.

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